Tuesday, February 10, 2015

Taking back the hospital

I was so excited to take Max to the cerebral palsy specialist the other week. Yet I was dreading the visit, too. Because the doctor works at the hospital where Max was born, I haven't been back since, and the hospital has loomed large in the parts of my heart and mind where the grief resides.

I can vividly picture the NICU: Max in a glass incubator connected to various wires, the preemie next to him whose heartbeat was visible beneath his translucent skin, the sprawling nurse's station, the lactation room, the conference room where the doctors told us that Max had a bilateral stroke.

I've thought about going back to the hospital by myself to help control the residual grief—if I saw it once again in a clear state of mind, I've reasoned, perhaps it would have less of a stronghold on my emotions. But I never did go and now, I had no choice. I wasn't sure we'd even be able to get to the NICU, yet it was easy enough: After the doctor appointment Max and I took an elevator to the one I found out was upstairs and wandered around the open areas. I spotted a door to the NICU Suite, which looked somewhat familiar. "I think that's it," I said, and a lump rose in my throat.

Max and I hovered outside, peering through the glass. He knew the appointment was at the hospital where he was born, and all week long he'd been saying he wanted to see "his" crib. As we stood there I explained to him that he was in the NICU after he was born because he was sick, but then he got better. There was a baby in an incubator directly in front of us. Max wanted to know where the mommy and daddy were. I said the doctors were taking care of the baby, because he was sick, and the mommy and daddy would be back soon.

Surprisingly, I didn't feel freaked out or sad as we spoke, probably because I was focused on Max and watching him take it all in. I thought, If I could have known back then how he'd turn out, I would have been OK. But of course, you don't know.

I tried to locate the lactation room where I used to pump milk. But the one we found wasn't mine; it had new furniture. The one I'd been in had an old big white fridge and an ancient tan pleather chair that gave me comfort because I was able to sit there and do something that was good for Max, at a time when I otherwise felt powerless.

Then we looked for the conference room. I wasn't sure that was a good idea, but I couldn't help myself. It was the most mundane looking place where our lives were forever changed with one sentence: "Your baby has had a stroke." We went from parents who knew something mysterious had happened to our baby to parents who had an infant with brain damage. The pediatric neurologist sitting across from Dave and me, flanked by two colleagues, somberly telling us that Max might never walk or talk and could have severe cognitive impairment. The pediatric neurologist somberly telling us we could sign a Do Not Resuscitate if we wanted to.

I couldn't find the conference room, either, which is when I started wondering if we were in the wrong NICU. Finally, I asked a nurse where the NICU was with the big open nursing station. I explained that Max had been born there in 2002, and we wanted to see it. She told me this was a new wing, and that the NICU where Max had been was in another part of the hospital...and it had been converted to doctor offices.

The NICU of my nightmares was gone. I could never visit it and get the closure I'd had in mind. But that seemed OK. The NICU had evolved, and so had I.

That mom in the NICU, the utterly despondent one who cried for hours as she stared at her unconscious baby in the incubator, was a long time gone. The doom-and-gloom predictions about Max: They didn't come true. All those dreams for Max's future that I thought I lost when he was born had been replaced by other dreams. And replaced, most of all, by Max. This bright, curious, cheerful, sweetheart of a boy walking through the corridors with me, looking around, asking questions. So full of life and hope and promise and love and oh my heart.

The grief I feel from Max's birth is still there but it will surely continue to dissolve, the pain softened by the passage of time and Max's progress. The NICU suite, the lactation room, the conference room: They will loom a little less larger in my mind, because now I have a new vision of the hospital.

I didn't need to return to the hospital alone to exorcise the demons. I needed to go with Max.

I walked out the lobby doors with Max's hand in mine, and I left that hospital behind.

11 comments:

Did Max understand why you were visiting the hospital or care about his background? I think he did. He is awesome and has much potential. When you were grieving, what is it exactly that you were grieving? Was it the person you wanted Max to be, the experiences you wanted to have, the certainty of his quality of life, or did you believe, at that moment, that Max would be who the doctors said he would be? I'm glad that you're mostly over it now.

Probably he understood the facts, but the emotional aspect - that can be really, really hard for a child to connect to (just speaking from my own experience as an NICU baby). In many ways, it's just something normal to a kid - oh, yeah, I was here once, hey look at the cool machine. For my mother, it was very difficult to go back, and she was glad when I aged into adult care and didn't have to go back to that particular children's hospital. For me, it's been something I've heard about since infancy. Totally normal, in other words. Since we don't remember, it's kind of out of our grasp.

(PS: Ellen, I thought this headline said "taking him back to the hospital" and was quite concerned. Glad it's not an emergency visit!!!)

Its a totally normal thing for me too, hearing about being in the NICU. It always shocks people so much when I tell them I was 1 lb 14 oz at birth(28 weeker) and now I (and my my twin sister) are revatily healthy(we have our issues) and turn 17 in a week.

Thank you for this post, it really resonated with me. Even going back to the hospital where my little dude spent time in the NICU brings up many uneasy emotions and I can't decide how to approach it. But going with him sounds like a great idea, to see it with his innocent kiddo eyes. Thanks to you and fireman Max.

I think it is profound that "your" NICU is gone. That the source of such helplessness is now something totally different is indeed a metaphor for what's happened outside the hospital for you. I know that going back over and over to the same children's hospital where my daughter had so many procedures eventually made it into an odd kind of "home," and I would be glad for a fresh start. I'm happy to see you have yours.

Wow. What an experience for you! I can relate a little bit. There is a hospital in Montreal where I had most of my intensive disability-related medical experiences as a child. The institution is soon going to be moved entirely to a new building, so I have almost lost the chance to go back and visit as an adult. I have mixed feelings about that. Still, one of these days soon I'll probably go ahead and make a day trip of it, just to see if I recognize the place at all. My memories of that hospital aren't all bad anyway. I got good care and I do remember feeling very loved and supported when I was a patient there.

I had a very similar experience a couple years ago of returning to the scene of long-ago hospital trauma and finding it utterly unrecognizable; I got off the elevator, went to turn down a hall and almost walked into a wall! Something about the fact that the places that those things happened to me no longer exist was enormously freeing; it definitely exorcized some demons for me. What a joy for you to find that things have changed, and become better than you ever could have hoped.

Good for you for letting it go. We have to visit the hospital that was the site of our NICU (and a few PICU) horrible experiences. I still have a difficult time being there...I can feel a shift in my blood pressure, like I am getting ready for battle. The hospital ER where my daughter had cardiac arrest when she was 3 months old I have visited twice to thank the staff. But it makes me actually physically ill to be there...so I have stopped going. I love that for you this place no longer exists in the same way as it did back then--as you said, everything has changed.

I love this post. We spent 93 days in the NICU with our micropreemie son, so strangely enough, the hospital started to feel a little like "home." (That's not to say that we didn't experience major trauma while we were there.) We go back often to visit my son's nurses because they saved our son's life; they became our friends. Every time I walk back out those doors, it gets a little easier - the edges are becoming less sharp, and when I look at my 2-year-old son who was given a 4% chance of healthy survival skip down the hallway, I know how lucky we are - my son came home!

It's always been a struggle for me to return to the place where I went into labor (4 months early) - that's my kryptonite. I'm hoping that I can find more peace as the years go by. http://www.preemiebabies101.com/2014/06/going-back-scene-trauma-finding-closure-healing/